Some Thoughts (After about 20 Years) on AIDS

I’m a sucker for a story about AIDS. I had to stay in my seat at Rent in NYC until most of the crowd had left the building because my companion was convinced my tear-stained, swollen face might cause concern for those who saw me. So I knew what would probably happen when I went to see the Dallas Buyers Club movie. But Rent was years ago and I’ve grown, right? Ha. (sniffle, sniffle) Ten years after Rock Hudson brought AIDS from the health section to the front page and headlines, the faith-based group with whom I worked created a resource for churches to minister to persons living with AIDS. Some may say that was a bit late. In fact, we were the frontrunners … as the organization had always been. A women-led group of over a million members with a century long history of pushing the boundaries of race relations, addressing poverty, and giving women a voice, Woman’s Missionary Union was used to dealing with the naysayers. We’d been there. We’d done that. At the time, the phrase that I held onto came from an AIDS advocate who had successfully launched a ministry in his own church. “I usually tell people that we welcome people with AIDS at our church but we have a special section for them,” he reported and noted that the responses ranged from shock to somewhat admiration that they had found a way to put these people “in their place.” “Yes,” he continued. “We ask them to sit next to the adulterers, drunkards, and gluttons.” Back then, I thought the statement was brave. And, it was … then. But it was also an indicator that AIDS was considered a sin, that, somehow, the person with AIDS had brought this upon him or herself. And, as God as my witness, my thinking has changed. Now, after spending the last 20 years volunteering at an AIDS hospice and seeing a variety of individuals from a variety of walks of life leave this world as the result of a disease that was introduced into their systems from a variety of reasons, I put no trust in those who want to tell me why anyone dies. Anyone with enough confidence to explain good and evil to me, to separate the world into categories, to dictate complete strangers to eternal consequences … yeah, I have no need for further conversation with them. Simply put … shit happens. And … as a volunteer at a place where people spend their final days with their bodies breaking down to nothingness, I mean that … literally. What I do ponder is the one thing I can rail against and maybe … someday … see changed (cause, let’s face it, I’m not pulling a Lazarus on anyone anytime soon) is the injustice of the disease. Once I went to see a small anniversary production of the play The Normal Heart by activist Larry Kramer which revealed some of the stupidity that existed in earliest days of dealing with AIDS. The audience was only about 50 people. The very well-acted performances were done in an art gallery and in the round with actors only about three feet from the first of only four or five rows. I’d been working at the hospice for a few years at this point and had read And The Band Played On (the chronicle of the ever-changing-name and progress of the disease), seen all the AIDS-movies-of-the-weeks that were cropping up and pretty much knew what I was in for. Still in the middle of the first act, I began to tear up. By intermission, I was crying and dabbing my eyes. When the second act started, my friend had given me his drink napkin and people were passing me theirs from the back row. By the time the bows were taken, I was doubled over and sobbing. One of the performers left the stage with the others, raced backed to their dressing rooms and then back to my friend. “May I hug her?” he asked my best friend who was also gay and glad that the cute actor had even spoken to him. He nodded with envy that indeed a hug was acceptable. The actor grabbed me and held me tight and whispered in my ear, “It’s so sad. Thank you for caring.” I couldn’t speak so I just nodded. What he didn’t know was that while I wished I was crying for the loss, for the many faces I had seen depart us too soon, what really had me close to convulsions was the complete and total stupidity of it all. The play and much of what I knew about AIDS comes down to -- humans are idiots. AIDS might not be closer to a cure but certainly would have lost less souls if individuals, governments, pharmaceutical companies and societal groups had chosen to do the right thing. Instead everyone chose to fight for their right to … WHATEVER. And that sense of “justice” led to the injustice which continues to bring tears to my eyes. Some people wonder how I got involved with AIDS. They think I must have lost a close friend or family member. Nope. I simply wanted to do something in my community and when I asked the group I had enlisted who had the same sense of needing to make a difference what they wanted to do, the two people who showed up on the night of the decision happened to be gay and happened to suggest AIDS. So I began to research what the fourth largest city in the nation had by way of AIDS ministry opportunities, and I found an AIDS hospice. Since they had SUCH a tremendous track record of dealing with churches (and at the time I was with a church and this was a church group and please read the previous statement with tongue planted in cheek), I had to do some convincing that we weren’t going to shame the residents of the hospice, that we had no intention of doing anything more than being the arms, legs and feet of those who were quickly losing their control of those needed appendages. Eventually, the hospice gave in and let us do more than wash the windows and wax the furniture and now, as I mentioned, we’ve been at it for close to 20 years. I thought of all of this today as I watched the Dallas Buyers Club. I will leave it to the critics to judge the cinematic value of the film. For me, what it did once again was remind me of the injustice of it all. As I so often do when it comes down to pure emotion, let me revert back to my Southern heritage, “This just ain’t right!” When we become a society that fears inequity less than law suits, that questions authority when the authorities are clearly not putting our best interests in the forefront, and that cannot be bought by big business when the fate … actually the life … of our neighbor is threatened, then I will stop crying.

But ... I Made It

A couple of years and several pounds less ago, on a walk with my twin brother Kelly, he asked if I would want to climb Mt. LeConte in the Smokies as a recognition of our 50th birthday. Since Kelly has never asked me for much of anything and since we've gotten closer as we've aged (no, we didn't have that "twin thing" everyone wants us to have when they learn we are), I said "yes!" almost immediately.

Really, it didn't take a lot of thought. We were giving ourselves two years to get ready. Kelly used to minister in the area and had great connections for a place to stay. We thought we might even get two houses close together, invite lots of friends and family, and make a week of it. The planning walk was so much fun, I was really looking forward to the reality.

We checked in on our 49th and were still committed. However, I was having to curb some of my enthusiasm. I was starting a new career venture without much of a financial safety net. That meant I wasn't going to be able to rent the extra house or the van I had hoped my friends might travel in to join in the festivities. Kelly toned down his guest list as well. But we were still game.

Spring of 2011 brought me some sense of job security and a little less stress which was good because my internal activity was not matched by my external and I had gained some weight. Probably too much weight to be thinking about climbing a mountain. July 20 -- our actual birthday -- came and went with me committing mentally to get healthy but physically only managing to test my grit on the treadmill with an incline of 15. When I made 6 miles, I felt like I had a fighting chance but I still worried. AND I still wasn't training like I should have been.

When I saw Kelly's birthday photo, I thought, "Well at least he's not in his best form either so maybe I won't slow him down." Little did I know that that day he committed to daily 3 mile walks ... on the hills of Nashville, his home! When I saw him at the airport, the night he and my sister-in-law Karen picked me up for our birthday adventure, I noticed he wasn't quite the same. A lot less pudge!

I fretted much of the ride from Tennessee's capitol to Tennessee's vacation paradise. I had visions of having a heart attack on the side of the mountain and having to be Lifelined out of there. It didn't help when Kelly and his might-as-well-be-a-son-boarder Brent started going all MacGyver when prepping for the hike and discussed how to use a couple of branches and some jackets to make a gurney to carry someone down the mountain when injured.

My anxiety was lessened somewhat when I saw the incredible lodging Kelly has arranged. A friend of his had taken advantage of a foreclosure and we were living the high life -- literally and metaphorically for a few days. Log cabin exterior on the side of a mountain with a view of the tree-covered valley from each of the three floors. Three huge bedrooms, jacuzzis, incredible kitchen, hot tub and porches with swings and rockers. Definitely a Smokie Mountain pleasure spot.

In fact, I began to wonder if climbing the mountain was really THAT important. I could let Kelly and his friends make the trek for me and just enjoy some girl time back at the house with Karen and my niece Bethany.

But that thought passed quickly as I remembered my commitment. I gave the guys (one other friend of Kelly's joined us) the "out" of going on ahead (which they gallantly refused to do). I made my excuses -- too big and living at sea level. I grabbed every bit of help offered -- poles, Kelly took part of the food, and I prayed.

We got to the trail at 7:30 a.m. I was drenched in sweat by 8:15 a.m. I heard Kelly mention that he had considered turning around on his first trek up when he and his friends reached the bridge. We hadn't reached the bridge yet and I'd already plotted how I could spend the day back at the car waiting for the boys to return.

But I made it to the bridge, and then Inspiration Point, and then the Pulpit, and the salt mine, and finally to what Kelly called the "Yellow Brick Road" part of the trail -- a tree-lined, flat expanse just before you make it to the lodge on top. It wasn't pretty -- I huffed and I puffed and I stalled and I preached whole sermons to myself about taking just that next step, but I made it.

Coming down was no problem. I actually was ahead of one of the guys who was in much better shape than me. By this time, I'm sure I was delirious though. I began to easily relate to Young Frankenstein's dance number as my feet seemed to take on extra poundage in the clomp, clomp, clomp of those 5 miles back to the car, I still did it. And I must admit, I didn't mind when the boys were having to stop for rest breaks rather than just tending to me!

Getting in and out of the vehicle before making it back to the lovely surf and turf meal we'd planned was not a moment of ballet beauty but I made it. And up the stairs to my jacuzzi? Not graceful at all. But I soaked.

I was once told that "but" stood for "behold the underlying truth." I wasn't a model of "50 and fabulous" climbing Mt. LeConte. But I made it ... with my twin to encourage, wait on and support me, I made it.

Ahhhh ... The Simple Life

I began yesterday at Omega House, came home to do a couple of massages, picked up Roger to go to an art gallery event that a new friend had invited us to attend, and ended the night at a Montrose hole-in-the-wall known for its fries, flirtatious waiters, and salads.

A pretty typical day in the nontraditional world of Karen Campbell. Yet, throughout the variety of experiences there was always an anchor moment, reminding me that the path I've chosen is simultaneously odd and familiar.

For instance, at the AIDS hospice -- after mopping all the floors, cleaning the kitchen post-breakfast, and attempting to chat up a couple of non-responsive clients -- I took a break and watched the Food Network. Watching other people cook is something I do every day. I find viewing creativity and making mental notes of things I can try incredibly relaxing. I just don't usually do it with a former massage therapist and nurse who now weighs about 80 pounds and who has extremely strong opinions on Rachael Ray's ineptitude in the kitchen.

A weekend massage is pretty typical for me as well. Two? Not so much. Two back-to-back? (yes, massage pun intended) Definitely not. But these were returning clients and both needed what I had to offer ... and they liked the back rub as well. I've learned that not everyone who walks through my massage therapist's door is solely in need of touch. Sometimes they also want to be heard.

At the art gallery, I encountered new friends who have great connections. As a networker and a passionate supporter of passionate people doing good work and using fashion to do so, I, well, ... I connected. By the time we were through touring the cute old cottage that had been expanded into a three story studio and artist's residence, I had secured the space for a potential fundraiser and gotten a promise of introductions to much needed jewelry designers.

At dinner, I laughed and willing received the good natured barbs coming my way as I enjoyed Roger meeting my new office suite mate Lyn. Both extroverted, they barely needed me to inject as they explored the why, when, where, and how of their pursuit of life, liberty, and happiness to date.

When I settled in at home at the close of the evening, I had an incredible sense of "rightness" to my day. People often comment on how good it is that I volunteer and work with nonprofits. They get this look in their eyes like I used to see when members of the congregation talked of pastors or missionaries. The "wow-there's-no-way-I-could-do-what-you-do" distant stare they suggests they aren't going to hear how ordinary it all really is.

But it's true. Doing the right thing can come naturally. I know how to cook and clean, so I do so at the hospice. I know how to make people feel good physically, so whatever they want when they're on my table -- be it silence or conversation -- I'm there for them. I know how to tell a story so I tell the story of passionate social enterprisers at an art function. I know how to listen so I do.

At every turn of my day, I'm rewarded. At every turn of my life, I'm blessed.

Disney Was Right

Dianne volunteers at The Rose on the days we have artists come in and lead our clients and their friends/family through some activity designed to help them take their minds off the fact that we exist because breast cancer exists. She's a friend from my previous life in politics and I'm thrilled she's as committed to causes as I am.

On our last Pink Day at The Rose -- that's what we call them -- she was reacquainting herself with her past passion for needlework as she waited for someone in the waiting room to take us up on the offer to take up needle and thread. I guess it was all that embroidery surrounding me (subliminally suggestive of altar cloths) because I felt the need to confess.

"I still haven't had the chance to get a note out to your friends who might lead one of these days for us. I love the idea of healing drumming. . . . "

Without looking away from her work, "Then go do it now." Dianne is both artistic and pragmatic.

Recognizing that she, Terri, the needlework artist, and Jill, the other volunteer, had the situation in hand, I scooted off to type up the email and copied her on it.

When I got back to the conference room, I began to explain to Jill that in a couple of weeks that very space would be transformed into a pop up shop for Sweet Notions. While The Rose is my primary client, Sweet Notions is another nonprofit in which I invest my time. The two founders started it with very little money (and still have very little which is why my time is an investment and not a paying gig) and collections of jewelry from family and friends. They turned that into a social enterprise that benefits vulnerable women. The London version of it -- where one founder lives -- has proven to be very successful as far as life transformation is concerned and is making some strides at sustainability. The Houston manifestation is in a reinvention phase.

"We are trying to arrange with a local group who works with women coming out of human trafficking to provide jewelry-refurbishing as art therapy. When we get pieces in the collection phase that are outdated, we utilize artists' input and create templates for how to reclaim the piece in some way. We call that part Design Camps and they've done very well in London. But in Houston, we're lacking a partner. I've got a lead that the Y might be a connection but we haven't heard back from the contact there," I told Jill.

At that moment, Dianne's phone dinged, indicating she had an incoming text or email. I noticed she had a slight smile on her face as she picked up her smart phone. The smile turned into a bonafide grin as she read and then said, "You have now."

"I have now, what?"

"You've heard from your contact at the Y."

"What? How would you know that?"

"Because the healing drummer friend of mine, the one you just emailed, is the same woman who runs the program for human trafficking at the Y and she just replied to you!"

And, that my friends, begins the story of how Sweet Notions now has a partnering entity to assist women coming out of human trafficking. Houston maybe the fourth largest city in the U.S. but it's really just a small world after all.

Happiness is ...

An editor who I've lunched with once and who has seen me move from the political sector to the nonprofit world thanked me this week for a press release I'd sent.

For those of you who may not be in the wonderfully wacky world of media, that's not something that happens every day. So I thanked her back. She replied, "We appreciate your eye for a terrific story and your wonderful writing!"

Wow!

Now, in the grand scheme of things, that compliment is not a big deal. I mean, really, one of my friends is well on her way to starring in and producing a television show and another just completed a writers training in Africa and has a blog that simultaneously inspires me to grab a keyboard and start typing and/or grab an apron and work at the Dairy Queen again because I couldn't possibly be a writer of his caliber.

So, I'm not exactly examining doors to ascertain if my head will fit through.

But I am pleased.

And on that delightful little high, I hear my dear friend and the longest-tenured one I have in Houston say today -- in an almost off-handed, of-course-you-are way -- that she's programmed her phone to play the theme for "Mission Impossible" when I call. When I check for why, she responds as though it's totally obvious, "You don't ask 'what can I do?', you ask 'what else can I do?'. You're always looking for what needs to be done and doing it."

I gave up wealth, position and power a long time ago. I'm glad to know that instead I now have a reputation.

I am a very happy woman.

Happy Pride!

Perched on the back of a hot convertible with her partner by her side, she was ready for the parade. I took a moment to remind her how far she'd come -- from bible school to business school, from wide-eyed to savvy, from uninformed to advocate and organizer. She smiled and said something I would hear her repeat several times during the evening, "Amazing. Simply amazing."

As the Female Grand Marshall of Houston's Pride Parade, Tammi had a fairly good perspective on the evening. As her "wheel guard" during the walk/ride along Westheimer in Montrose, the area of the city known for its nurturing of life's alternatives to what some would deem the "norm", I had a chance to reflect as well. I marveled at the crowd of surely more than 100,000, at how the parade has grown in just the five years I've been participant rather than observer, and in many ways, how it had matured.

I still remember my first Pride Parade. Sitting on the curb at one of the less populated points at the beginning of the path, somewhat startled at how "typical" the entries were -- businesses, church groups, families, friends -- all supporting the LGBT community. I cried when PFLAG came by. To see older Mothers and Fathers loving their adult children by supporting them publicly moved me. I wanted to hold the friends that surrounded me closer in that moment, and assure them they, too, had a support system near.

My volunteer and political work has offered me the chance to drive the parade route, walk and cheer along it and with this last parade, get through early enough to come back and sit in the VIP section.

With risers constructed several feet above the route, I had a great view of the rainbow colors and could hear the musical entries as they paused for a moment for the announcers' introductions. I had to smile when I thought of what they'd had to say as Tammi came by. They noted her political activities, her advocacy, her family's support. But they didn't point out one of the most amazing things about her entry because they didn't know. She didn't either until we were all gathered at the starting point. That's when she began to take it all in -- two young family members were holding the banner, another woman and I who had worked with her on campaigns stood by the front wheels, and two college students and one-time interns covered the back. The reality hit and she smiled.

"Oh my!" pausing, she looked at me. "You know what I'm about to say, don't you, Karen?"

The others were waiting and checking us both. And it was her partner who prodded us to share.

"Everyone of Tammi's crew is straight," we replied. Had she intended to do it, surrounding herself with allies would have been noteworthy but the fact that she had simply reached out to representatives/relationships from various aspects of her life and come up with six who supported but had no letter designation in the LGBT acronym was somehow even better. At that moment, my Pride Parade truly began.

A Life Well-Lived

We looked at the bag. Carolyn was so petite, the contents looked more massive than I assumed it would be. We then looked for a way to spread the ashes. Some clam shells she had collected and spread near the flower garden would do. Soon we were digging in and spreading her ashes on the very flowers she had planted and tended over a year ago.

To be a part of the last memorial for a life well-lived was an honor. Her husband, best friend and I ensured that what remained of her physically would continue to nurture that which she loved.

"Would you mind if I prayed?" I asked my two companions.

"We'd love it," they responded.

I then asked the Creator to help us remember, to laugh, to embrace all that would make Carolyn smile. We hugged and our memorial was complete.

She lived more than 7 decades and after helping hundreds of school kids know what it means to live in good health, she pursued a balance between emotional, spiritual, and physical well-being.

Carolyn was my friend. Carolyn was a do-gooder. Carolyn was a teacher. And now Carolyn's ashes nurture and encourage growth. Seems reasonable to me!